TTC: Pregnancy on Prednisolone or similar part 7

[ChoccyPud]

A positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

www.mumsnet.com/Talk/conception/1419032-TTC-Pregnancy-on-Prednisolone-or-similar-part-6

Part 5 www.mumsnet.com/Talk/conception/1391787-TTC-Pregnancy-on-Prednisolone-or-similar-part-5

Part 4 www.mumsnet.com/Talk/conception/1366323-TTC-Pregnancy-on-Prednisolone-or-similar-part-4

Part 3 www.mumsnet.com/Talk/conception/1348773-TTC-pregnancy-on-Prednisolone-or-similar-part-3

Part 2 here www.mumsnet.com/Talk/conception/1323594-TTC-pregnancy-on-Prednisolone-or-similar-part-2

Part 1 here www.mumsnet.com/Talk/conception/1236324-TTC-pregnancy-on-Prednisolone-or-similar

London am so, so sorry to hear this is happening to you again. You have every right to feel sad and low about it all. I hope that between all of us here - especially with CHoccy and Duggs just having had further mcs and Ari and Euro doing a lot of research too we can find some way of finding a way for it to work out for you all.

I had a miscarriage on my first round of Pred/intralipids and Mr S since added the hydroxychloroquine into the mix (am 27 weeks pregnant today). Duggs and Choccy were you both on Hydroxy? I can't remember. Something for you to ask about thought too London?

I too have an obsession with magpies - anyone else? I have noticed they are all single at the moment. I think it must be to do with the time of year - they were all in couples a few weeks ago! But it is just fables as we know. Count the single ones and add them together to make it seem better when you see them.

Duggs I am so glad you enjoyed the trip into the desert, sounds to be just what you needed. Horrible to have to go through miscarriage away from home but it sounds better to be able to do something nice rather than wallow in your own home with a bottle of wine. I don't think you have reached the end of your journey yet but on the adoption subject I think, whether or not you get to that route, it is a really lovely idea. In fact before DH and I started trying (then failing) to have a baby he always said he would much prefer to adopt so we could give a child a home than have our own. Obviously things did change but the sentiment still stands that it is a wonderful thing to do. Friends of friends have recently taken home a sibling group - a little boy and a little girl - and my friend says it is as if they have always had the children with them.

I finally have a housing update - for those of you sharing housing difficulties. We have finally exchanged today on our Brighton property and will be completing on Tuesday 8th May. Last year when I had the two miscarriages in a row we had the flat on the market for a year, sold it but it fell through then had to start again. It feels like after over a year of pregnancy failure and housing situation failure that left us in total limbo something is finally moving.

free that is great news on the housng front!

The DQ alpha thing is something I have had in the back of my mind for a while, a bit like the NK cells thing (which of course my instinct turned out to be right about). So perhaps I should just go with my instinct and get it tested. But as you have probably noticed about me by now, I like to take things fairly slowly and step by step! So for me, one more round of IUI then the NHS IVF before going to private IVF with more extensive immune testing is probably the way to go. The thing that scares me about ARGC and the like is the treatments. They seem much more aggressive than what Mr S offers. And I just wouldn't touch the blood product treatments (apart from maybe the one where they give you your partner's blood products). That kind of stuff just makes me nervous.

Euro, I agree, the dr G treatments sound terrifying which is why i didn't go there in the first place. I am going to take some time to reflect. Just been on amazon buying yet more fertility books and vitamins, like it will help. Not mental in any way, oh no!

lol If you saw the huge list of supplements I'm currently necking every day london you would definitely say I'm mental! :)

I agree the Dr G treatments sound scary, but it's probably worth at least having the tests done so you know what you're facing. Esp. perhaps the DQ alpha one, euro, if your instinct is telling you there might be something in it? I'm a great believer in instinct, personally.

There are more supplements than food in my kitchen cupboard! Lol

I have one entire shelf of one of the kitchen cupboards to myself, for my supplements. It's ridiculous, really.

Interesting! choccy my second mc I got to 12.2 wks and was trisomy and then these are all the ladies with DC already so I think there is something else at play! sue and snoopy may be interested too as I know they have had 2 chemicals on dr s treatment? Rather than following up with dr s who will prob offer me hydroxy I think I will take everything to dr gorgey just to see what he thinks. Thank you ladies. I shall try to find a contact and keep u updated. It might come to nothing but I have 6 mths before adoption process can start anyway after ivf so may as well make use of that 6 mths. I may even get a natural bfp in that time - whatevernext right - off to read your links! Great news on house free such a trooper being here for us stragglers! Thank u x

Here you go duggs, Dr Gorgy's contact details www.fertility-academy.co.uk/about-us/dr-a-gorgy/ . HTH!

London I'm so sorry, how could I have missed your post earlier. I'm sorry you're going through this. Its a really horrible time on here at the moment, but saying that I have no idea what I'd do without everyone here, and at least we can share and take comfort from each other.

I've had a quick look at the Gorgy info.. Not keen on ivig I don't think. All very aggressive. It might be slightly outside Mr S's bread and butter work to look at the DQ, or HLA side of things, but isn't it just a twist on the "staightforward" NKCs causing rmc problem? Will read properly later.

Well I have looked at the gorgy tests! There r 7. Not sure from here which ones are over and above dr s? Surely the DQ comparability test is not relevant if I've had a 12 week trisomy mc? Anyway I will check when I get back unless anyone knows on here the difference. (can't type them all on this iPhone but follow ari post! What about sue what do u think? ( she says clutching at straws) DH going to push me off cliff if I dont talking about all this. ( he says it is good for me and fine) but I know I'm incessant x

Forgot to add the key point -!treatment - all very well being "diagnosed" but what is difference in treatment ? Just the ivig ? Sorry am monopolising this poor thread but hopefully relevant to a few of us even if just to know we havent missed anything

Yes, quite, I wondered that. If the treatment is the same is there any point spending more on the tests. Tbh none of the test results I have had yet have made me feel like any better. Just stressed me out. But then of course if there is any chance of a "cure" we want to take it.

...and bear in mind that Mr S stopped using IVIG because, as I understood it, he wasn't seeing any greater success with it and it's really really expensive.

In a day or so courtesy of those lovely people at Amazon, I shall have my nose in Beer and Regan so may come up with something...

Choccypud That's so funny. I would never lay awake for 3 hrs I am actually sound alseep until the light goes on and I hear the footsteps The problem is that DS usually goes to bed at the same time so I can't drag DH upstairs and can't drag him when I get in from work either due to DS and legs in the air yes I did used to do that or put my hands under my bum but too exhausted from middle of the night SWI. Glad to hear you are in better spirits.

London Sorry to hear of your news. This is getting all too common with all of us. We need answers. If only .

All I must say too much sad news on here. Makes me think even with a BFP it will just go the same way.

I have pulled the list over and I have amended mine to say age, how many MC, DC and PRED/Fragmin (blood thinning drug). The fragmin did not work on it's own but it did seem to work the first time on Pred (can it really be a coincidence). I didn't even have an NKC issue when my DS was born age 41.5.

Monday 23rd April

The babies are arriving!
Stogan - V high NKC - cycle#2, DC#1, Baby girl born Sunday 11/03/12 7lb13.5. Our First Pred Thread Baby!
Digitalgirl - High NKC - BFP cycle#2, Baby boy (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12 Our Second Pred Thread Baby!

BFP 3rd Trimester
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks 38+0 Due date: 07/05/12
Comedy - V High NKC - BFP cycle#2, DC#2 ? 36+0 C-section booked: 14/5/12
Iggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- 34+6 c-section booked for 16/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 34+1
Freelance - V High NKC TTC#1 Hydroxychloroquine, Pred, Intralipids, 400 Cyclogest, Thyroid/hashimotos. MC 1st Pred cycle. DC#1 26+6 Next appt with Mr S, 25th May EDD 24/07/12
Cheerfulcharlie - V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 26+5 EDD 24/07/12

2nd Trimester
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 23+3
coleyoz - V High NKC. DC#2, BFP cycle2, 22+6
FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin, 18+5
Mercator - V High NKC, TTC#2. 18+4
Hopefulfor2nd - High NKC - TTC#2. - 17+4
dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 17+4

1st Trimester
PQ77 - V High NKC TTC #2 (BFP cycle one but mc) 13+0
London - High NKC, add details!??

TTC ? ASSISTANCE - SO/IUI/IVF
duggs1976 - High/V High NKC - TTC #1 - IVF cycle #1 ?pred, intrallipids, metformin, clexane, cylogest
Havingkittens - Upgraded from High to V High NKC TTC #1 -10 pred ? 3rd cycle SO
Snoopygirl - V High NKC TTC, pred cycle 5, Super Ov Cycle 3
Abney (44), SO 2, 6 MC No pred (2 chromosone, 4 unexplained), 1 DS Pred Cycle 1 & fragmin, 4 MC on Pred (1 fragmin),
eurochick - TTC#1 High NKC, pred cycle 4, Super Ov & IUI
Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, combining IVF with Immunotherapy
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine)
Suemays - V High NKC, TTC #2. Superov. (Pred & Hydroxychloroquine)

TTC
ChoccyPud - V High NKC - TTC#1 (Pred & Hydroxychloroquine). April mc on treatment.
Willitbe - RMC, NKC not tested, TTC #4 cycle 2 (after m/c 12) Fertility consultant
prescribed pred.
GreenOlives - High NKC, TTC#2, Pred Cycle 2
picolina - V High NKC MC on treatment (taking a break on holiday)
Holldoll - High NKC - Pred, Cyclogest & aspirin
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
buster76 -V High NKC, Factor V Leiden.
BellyD - V High NKC, MTHFR homo, TTC#1 cycle 2, hydroxychloroquine

Current status?
Cherrycheeks - V high NKC, TTC#2
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Breezyweezy - V High NKC - TTC#1
AandRmum - High NKC
Cornflakes30 - V High NKC, underactive thyroid
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2
Zoeella V.high NKC, Factor V Leiden. abandoned IVF, pos PCOS

Oh blimey abney, I don't know how you can wake up and SWI after being asleep for 3 hours either. I suppose needs must!

london sorry to hear you're going through another miscarriage

We do seem to being going through a bit of a rough patch on here lately. Very disheartening.

My news is that I am on my third cycle of SO and had my follicle tracking scan yesterday only to be told I'm probably not going to ovulate this month. I have just one follicle, which is a tiny 8mm - not even normal ovulation, let alone "super". It was CD14 so based on the fact that eggs get released at 20+mm and grow about 1-2mm/day it wouldn't get to that size before the end of my cycle. Really hoping this is a one off anovulatory month but I have to have a blood test to check my FSH again as, although it was tested at the end of last year and wasn't too bad it can change monthly at my age (I'm so bored of hearing that term "at my age"!). I have been prescribed a different set of drugs for next cycle including Gonal F which is an IVF drug. It will be interesting to see how I respond to that. I am supposing that if I don't respond to that either then I suspect IVF won't look too hopeful either.

Quick Q - this hydroxy drug? What r side effects when do u take it from?

Answer: no noticeable side effects, though appetite feels a bit supressed (until Pred kicks in...). One pill a day, in the morning with my breakfast. Feel completely normal on it, unlike Pred. And I've had several proper gunky colds (sorry tmi) since I've been on it, so I reckon it is definitely having an effect. You have to take it for 6 weeks before ttc to let it build up.

Thanks choccy sounds like a dream. Was pq on it?

Is anyone on it instead of pred?

London I am so sorry to hear your awful news. When will things improve for all of us? It seems that there is an awful large gap now between 2nd trimester and the rest of us bearing in mind that PQ is really in the 2nd trimester now. I wonder if birth rates decrease naturally this time of year due to all the excesses at Christmas? It's a bit strange that there hasn't been many BFPs and the ones we have had have all ended in chemicals or miscarriages. V strange. Sounds like a job for our stats expert Duggs!

Duggs I would go to see Dr Gorgy as he is one of the few who do the Greek (hidden Chlamydia) test and its not too expensive (treated with specific antibiotics for you and your partner). I am considering sending off the sample myself. It can occur naturally apparently so you can get it after having one successful pregnancy as its not classed as an STD. Euro and London I am also terrified about having IVIGs due to the risk of contaminated blood. Even though they say the risk is really small, thats what we have all been told about having more than 3 miscarriages yet it still happened! I just feel like I have such bad luck that I would be one of the unlucky ones who ends up receiving a contaminated transfusion!

Zita West now has Dr Ndukwe who was at Care and he has a very good track record. He also uses Intrallipids and Steroids but only uses IVIGs as a last resort.
He does the following:
Lack of Blocking Antibody to Pregnancy
In normal pregnancy the part of the embryo derived from the man‟s sperm will cause the woman to develop antibodies that form a protective ?ring‟ (a blocking antibody) around the embryo. In couples that are a close genetic match there is a lack of the blocking antibody to pregnancy, the embryo or foetus is rejected and the pregnancy fails. The tests required are a blood test from the man and woman to determine if they are too closely linked genetically (called, ?DQ alpha matching‟ of the couple). We treat this with low dose Aspirin, steroids, low molecular weight heparin (Clexane or Fragmin) and Intralipid infusion. Some authorities recommend Lymphocyte Immune Therapy (LIT) for this.

Development of autoimmune antibodies
This category includes women who develop autoimmunity to phospholipids, thyroid molecules or other tissues. Phospholipids are the ?glue‟ molecules for implantation and development of the placenta. If antibodies attack them these processes cannot take place normally.

It also includes women who develop antibodies to the baby‟s DNA or DNA breakdown products and this problem is reflected by a positive Anti-nuclear antibody test (ANA). While we test for this specifically, tests can also be done for double-stranded DNA, single stranded DNA, polynucleotides and histones (DNA breakdown products). Some of these women have clinical manifestation of early mixed connective tissue disorders. The treatment for these problems includes the use of steroids (Prednisolone), low-dose Aspirin and Clexane.Clients with thyroid antibodies and who have thyroid stimulating hormone (TSH) levels above 2 will require thyroxine supplements.

Thrombophilia
Women in this category have a genetic or acquired thrombotic (blood clotting) tendency. This includes all thrombophilias including Platelet activation inhibitor gene polymorphism (PAI-1) and Methylene Tetrahydrofolate reductase gene mutation (MTHFR). Treatment includes low-dose Aspirin and low molecular weight heparin (Clexane/Fragmin). Women with MTHFR gene mutation however only need high dose folic acid (5mg) + Vitamin B6 and Vitamin B12. Femibion which contains Metafolin (a very active form of folic acid) and Vitamin B6 and Vitamin B12 may also be used.

Elevated Natural Killer (NK) Cells, elevated CD19 and CD19+, CD5+ immune cells and altered TH1:TH2 ratios
In women with elevated natural killer cells too much tumour necrosis factor (TNF) is produced which can attack the embryo and prevent implantation. Possible treatments may include steroids, low molecular weight heparin (Clexane or Fragmin) and Intralipid intravenous infusion. Intravenous immunoglobulin or Humira may be used in women allergic to egg or soya. Elevation of other CD cells can produce antibodies to hormones and neurotransmitters. Treatment may include steroids, low-dose Aspirin, Clexane/Fragmin, or selective Serotonin re-uptake inhibitors (SSRI) e.g. Prozac.Elevated TH1:TH2 ratios are associated with recurrent embryo implantation failure and recurrent miscarriage. The treatment is Intralipid intravenous infusion, steroids and Clexane/Fragmin. Intravenous immunoglobulin or Humira may only be used in women allergic to egg or soya.

I was told that the ARGC treat miscarriages with IVIGs and that alternatively it's intrallipids with steroids the same as Mr S, so unless you are happy to try the IVIGs I think its probably not worth switching. Most of the other clinics do not give as high a dose of steroids as Mr S (apparently) and start from BFP. Mr S says the damage is already done at that point. Saying that about IVIGs, I have heard that the ARGC are often the last avenue for some people and they have had success so maybe the IVIGs do work? I know that Dunnit was having IVIGs so maybe she is the one to quiz?

The other drugs that some of the other clinics use are Humira and also clexane. I know Humira is really expensive and it is sometimes used with pre-conception intrallipids. I cant afford to pay for intrallipids every month in the hope of getting a BFP and Duggs it didnt help you before your IVF. I asked Louise at NLC and she said that some of their clients have intrallipids every month to calm their immune system down. I have been looking at natural ways myself and have found the following can help to reduce an inflamed immune system:

1. Green Tea
2. Red Apples
3. Red Grapes
4. Red Wine :)
5. Low GI diet or mediterranean diet
6. Eliminate cardio exercise or overtrain (dont partake in moderate exercise) - www.livestrong.com/article/367272-how-does-exercise-improve-the-immune-system/ www.livestrong.com/article/388218-how-does-exercise-affect-the-immune-system/

"In the early stage of moderate exercise, there is an increase in the percentage of NK cell numbers in the peripheral blood. Decreased cell margination caused by catecholamines is the suggested mechanism.The lytic activity of the NK cells is also enhanced with a 40% increase in the NK cell activity one hour after exercise. However, sustained exercise shows a trend in favour of suppression of the NK cell activity. A study in 1995, has demonstrated a marked fall both in the number as well as the activity of the NK cells for almost a week following a single bout of 90-120 min of exercise at 65% of max heart rate."

Read more: www.bukisa.com/articles/231104_the-darker-side-of-exercise-immune-response-to-over-training#ixzz1szinrd4D
Strangely enough my only successful pregnancy with my DD was where I was overtraining for 2 hours at a time as was worried I was putting weight on after our honeymoon and didnt know why (I didnt know I was preg).

1. Marijuana!
2. No chocolate or sweet/processed foods and reduce fatty foods
3. Vit D (which we already take a supplement of)

10. High dose Omega 3 (but will become ineffective if taken for more than a year for some reason). In parts of the USA they recommend fish oils for NK Cells, 620mgs DHA 1200mgs EPA, this is the one I am about to start taking at 3 tablets a go: www.naturesbest.co.uk/fish-oil-1100mg-p516/ 11. Increase intake of oily fish in particular salmon 12. Reduce red meat 13. Tumeric 14. Ginger www.livestrong.com/article/493751-is-ginger-good-for-the-immune-system/

Lets face it, a lot of the above is native to an asian diet and there are millions of them so they must be doing something right!!!

Apologies if I am repeating any of the info above and dont forget most of this is from Google so it might not be correct!

links:
nutrition.about.com/od/dietsformedicaldisorders/a/antiinflamfood.htm
www.raysahelian.com/autoimmunedisease.html
theconsciouslife.com/top-10-anti-inflammatory-foods.htm
theconsciouslife.com/anti-inflammatory-supplements-for-arthritis.htm
www.livestrong.com/article/483356-foods-that-suppress-the-immune-system/

I have got a hysteroscopy booked in for next Thurs and am praying that I OV the following week so that we can TTC again. I feel like I have been out of the loop for ever! DH is away until 7th May so I may have to jump on him as soon as he gets back from the airport.

KIttens sorry to hear about lack of OV, you will prob be OK next month so dont panic yet!

Wow thanks sue ! So basically everyone recommends intrallipids pre and post bfp, high dose pred and clexane and asprin. I was doing all of the above.

So no point in moving - only 2 other things mentioned and that is ivig and hydroxy.

dunnit can u share your treatment programme ? Or pm if rather?

Yes who has now had a failure whilst on pred ?

Sue
Snoopy
Scooter
Choccy
London

Who else am I missing ?
Duggs

Oh had clamydia HIV etc as part of ivf anyway! Part of the £8k I have pissed in the wind and will be paying off for the next 8 yrs probably.. Childless grrrrr.... Good job Egypt is cheap.

Duggs I think you should look at going on the hydroxy whilst you are waiting for the adoption process as there are no side effects as far as I can tell. I think Mr S is the only one so far using hydroxy. When I spoke to Louise about switching clinics I was told he has other drugs too that he is using on his patients so I wonder what they are (might be worthwhile quizzing him). I think its a question of how long you can keep going on mentally on this journey as you are still relatively young compared to a lot of us!

As you know after my last CP, I really researched the diff specialist RM clinics as toyed with the idea of switching. I looked at Dr Gorgy, ARGC and Zita West and they all differ slightly in what they do. All have good success rates so its hard to decide what to do. I think that the ARGC are the most aggressive in treating NKC by using IVIGs and that Mr S is one of the cheapest and least aggressive. Zita West and Dr Gorgy are between them both. Its a shame there are no league tables to compare! My acupuncturist (who is now on the board of the Acupuncture Fertility Network) told me that he has seen clients who have had failed treatment (IVF and RM) go to ARGC and have been successful. Read into it what you will!

Duggs I think the chlamydia test you had as part of IVF is different as this one is only tested in Greece and only 2 clinics in the UK do it - its not routine.
Other clinics also use Humira. I know ARGC use cyclogest, prontogest and clexane as well as IVIGs but it might differ with every patient.
Maybe once you have built up the hydroxy and looked at any other tests you could try and use the frozen embryo as a last resort?
The other clinics do the Chicago test for killer cells so different to the Mr S one but not sure what the treatment plan is.
Would you look at surrogacy using your frozen embie?

Duggs I also think that Pico, Holldoll and BellyD miscarried on the treatment but not 100% sure. Must go to bed now!

London- so sorry to hear about your mc too.

Duggs - another one to try might be ureaplasma?

After my two m/cs and before I ever saw Dr S my specialist over here tested for that, found it positive and DH and I had to take antibiotics. Retested still there, more antibiotics. The next pregnancy I had (ie. This one)was after I saw Dr S so on intralipids as well. I mentioned the ureaplasma thing to Dr S and he was very dismissive of it.

In the UK it is not tested for much but outside the UK it often is. Even if the ureaplasma had nothing to do with it the antibiotics may have got rid of some other unknown nasties. I certainly got rid of a minor annoying recurring sore throat I hadn't really thought about previously.

It's just like a smear test. Cost me the equivalent of about £45 for the test so it's not a huge cost.